AVR 13th July in Bristol UK - Advice on a couple of bits

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Vincent63

Active member
Joined
Jun 23, 2015
Messages
30
Location
Somerset, UK
Firstly I would like to thank all of those that have given their time, advice, money and enthusiasm to create and maintain such an unbelievably valuable forum over the years.

Six weeks ago I did not know that I had any problem with my heart or AV. After face planting as a consequence of a collapse on a train and subsequent diagnosis of Aortic Stenosis due to a bicuspid AV I now know ... Otherwise I have been fairly healthy for a non drinking non smoking 51 year old. My condition deteriorated quite quickly so AVR was strongly recommended. This forum has been invaluable for me in understanding and dealing with all that goes with the situation. For the previous 12 months I had regularly been dizzy and sometimes had chest pains .. but ignored these

I will have the AVR on Monday 13th and it is almost certain I will go with mechanical .. personal choice after discussing with the surgeon and getting lots of input from previous posts here ... Nothing is guaranteed as we all know but for me I will take the Warfarin option and a high probability of no further surgery.

Right now I have been blessed with not not dwelling too much on the negative side of what is ahead ( put it down to being stubborn) . and long may that continue. I am thinking about some practical matters that i can't see easily any posts on ...

What is normal in terms of sleeping after getting home? i.e. is it normal to sleep in a bed .. I toss and turn a lot .. sleep on my back, front and side .. or is a couch or chair more norm al for a while ?

I have seen a lot written about pillows and cushions ... Are there any really good recommendations here ? especially UK sourced.

I have seen that 4 to 6 weeks is normal for return to driving ... but any advice on what is normal for returning to playing golf (albeit badly)

Any advice on flying afterwards . .. I would like to see family that are unable to travel to see me due to age which requires a short (1 hour flight) .... what is the experience on timing here ?

My work involves a lot of short haul and regular long haul flights ... again what is experience here ?

Does anyone in the UK have experience with self managing warfarin ? (after whatever time is appropriate) .. Do GP surgeries tend to be ok with this ?

Is it normal to regularly monitor blood pressure ongoing and if so any good advice on doing this at home?


I am sure there may be more but I would be grateful for whatever advice you folks can provide

Vincent
 
As far as I can tell from my experience and reading the posts of others, there is no "normal" in terms of sleeping after home. Some can't recline on their back for 6 weeks or more. I was able to fully lie on back from the first moment home up to 6 weeks. Then I had some issue that any pressure hurt on my rib cage for about 10-14 days and I had to sleep sitting in a recliner but not reclined. I think it would be hard to predict how you'll be. However I think sleeping on side was recommended to be avoided for a certain period because of the stress on sternum during healing. But I could be wrong about that.

I'd think you'd be OK starting to golf at 6 weeks working up to maybe normal at 3 months after. I'm just basing this on what was recommended to me in returning to a labour job. Basically the surgeon said at three months I could be back to work with no restriction but by at least the 2 month mark start rehabbing gradually with the type of movements and weights I'd be doing.
 
Hi Vincent - welcome from another UK member ! I'm based near London (although I'm from the west counrty) and had my surgery nearly 18 months ago. I'll try and answer some of your questions, though I had a tissue valve not wanting the ticking and warfarin.

In terms of sleeping I'm sure it is very variable, but most people find lying down painful/difficult during the first few weeks post surgery. In hospital you'll get one of those beds that you can angle how you like. At home I slept on our sofa as it happens to be a very good sofa for sleeping on and I slept sitting up with pillows supporting me, I just used a mixture of large pillows that happened to come with the sofa and my bed pillows (head end of the sofa is against a wall). After a few weeks I found I was able to lie down on my side for an hour or so each night and that way I increased the amount of time lying down until I could sleep in a regular bed. It was actually nice sleeping in our living room on the sofa as that meant I didn't disturb my husband when I was awake during the night, I could put the light on, come on the forum in the middle of the night when all our friends here on the other side of the pond were awake and get advice :) One invaluable piece of advice - have your mobile phone beside you so you can ring your partner (slave as someone on this forum said) if you need help, for example help moving pillows or whatever.

Golf - I suppose it depends on your swing. That upper part of the body is the part most sore post surgery. You might ask the physiotherapist you see in hospital if no one here knows. You will see a physio in hospital with regards to breathing exercises.

I've no idea about flying, but I know some people on here fly to where they have their surgery done so they must fly home afterwards. I suspect it's when you feel recovered enough, you might have to ask your cardiologist or GP post surgery.

Talking of GPs, although I am not on warfarin I know that our GP surgery does those warfarin checks so it might depend on individual surgeries. Best to ask at your surgery. Do you have a good relationship with your GP ? Make sure you book an appointment to see him/her for a few days after you anticipate being discharged from hospital to get ongoing prescriptions for medication. You know how long it can sometimes take to get an appointment. BUT if you have any problems post surgery make sure that you, or whoever phones to ask to see a doctor, tells the receptionist that you have just had open heart surgery, that way you'll get an appointment very quickly or a home visit.

Re blood pressure monitoring. I monitor my blood pressure from time to time, I did this pre surgery and now post surgery. That was off my own back, not because anyone recommended it, but generally most peoples' blood pressure is higher when someone else measures it, plus they don't usually do it under ideal conditions, ie you're talking, you're feet aren't flat on the ground, and several other things. If you purchase a blood pressure monitor make sure it is an upper arm cuff type as they are the most accurate. I have an A&D Medical one which is the kind used in hospitals, I got it from Amazon at a very good price, about £35. I usually take a reading everyday for a few weeks before I see the cardiologist so he can see my home readings. Btw, if you decide to take your own BP there's a very good website which tells you exactly how to do it accurately which I can find for you.

All the best !
 
I would suggest you may get a better peace of mind if you have a thermometer handy, I wish I would have had a good one, I borrowed someone's cheap digital one but didn't feel confident in its measuring ability. Fevers I believe are cause for concern, but I think its usual for your body to feel hot and cold often. Or at least I was experiencing being extremely warm and cold often almost every day. Having a thermometer on hand would have helped me know it was just normal fluctuations rather than an actual fever.
 
Everyone is different but I found it difficult to lie down flat for at least a month after surgery. I slept in a recliner. That left me in a position that I was not used to sleeping in but when you're tired enough, you sleep. I did get somewhat used to it after a while.

For golf, I would expect you would have to wait at least 2 and probably 3 months before getting the all clear from your Dr. Re. flying, as mentioned, some people fly home shortly after being released from the hospital, but I expect most are traveling with someone because you really can't carry much. After surgery you are not supposed to lift more than 10 pounds or so, and I believe that restriction is similar to the driving one - about 6 weeks. Your sternum needs this time to heal. Depending on how quickly you recover and feel up to working/traveling, the lifting restriction may be the limiting factor on your traveling for work.

When I first learned I had a heart issue (like you I had surgery less than 2 months later) I purchased a blood pressure monitor. I took readings before and then after surgery intermittently. I don't bother much now because it doesn't change much and is within range.
 
Thanks this has all been very good feedback. I am not looking to get on the golf course straight away but I have a boys golfing holiday ( my first ) planned for late October ... So golfing for a week in October is one of my major goals. As far as sleeping goes I don't have a recliner so I will have to make do with bed or sofa or whatever works .... Right now I am not very nervous about the operation but I am sure that could change before the 13th ...
 
Vincent63;n856572 said:
What is normal in terms of sleeping after getting home? i.e. is it normal to sleep in a bed .. I toss and turn a lot .. sleep on my back, front and side .. or is a couch or chair more norm al for a while ?

I have seen a lot written about pillows and cushions ... Are there any really good recommendations here ? especially UK sourced.
Click to expand...

I slept the first night in a recliner, from then on in bed. I could not lie flat for probably 4 weeks, but everyone is different. I recommend a recliner! maybe you can borrow one from soemone. I found an electric recliner at a re-sale shop. I used the electric part for adjusting position, not for standing/sitting.

I created a nest in my bed to support me in a reclining position. I used pillows, blankets, towels...whatever was around to build up a wedge shaped platform. I also found it important ot support my shoulders and neck. Those parts of your body really take a beating during surgery, and they use a lot of energy holding your head up during the day. I suggest a U-shaped travel pillow to support your head while resting/sleeping.

I did not get to a regular sleep schedule for several months. During recuperation I took several naps each day. The first week I'm quite sure I was asleep twice as long as I was awake. Simply taking a shower would knock me out for 2 hours! Because I needed assistance getting in & out of bed, I went to bed when my husband did, making sure to have my tablet & earphones with me. I watched two movies a night for the first few weeks. Insomnia is common.

Vincent63;n856572 said:
I have seen that 4 to 6 weeks is normal for return to driving ... but any advice on what is normal for returning to playing golf (albeit badly)

Any advice on flying afterwards . .. I would like to see family that are unable to travel to see me due to age which requires a short (1 hour flight) .... what is the experience on timing here ?
Click to expand...

Everyone is different. My surgeon encouraged me, after 3 weeks, to do whatever felt good.


I drove at 4 weeks, started cardiac rehab at 5 weeks.
At about 6 weeks, I did a flying leap (without thinking) across the bed after a cat. Didn't do any damage, but boy did it burn.
I rode a rollercoaster at 10 weeks, and kayaked at 11 weeks.
Mountain hiking and horseback riding at 12 weeks.

I've heard of patients flying home 2 weeks after surgery. I flew 6 months after surgery at 30,000 ft and felt no different than I did when I was healthier. My only poor experience with flying was one year before surgery - I felt like I was going to pass out as we were descending. I flew last month (again to 30,000 ft) and slept the whole time.
 
Hello Vincent, and all those who have replied to his post. I also give a big thank you shout-out to all who have shared stories on this forum and work behind the scenes to keep it operational.

Our paths are very similar, Vincent. I was diagnosed with bicuspid valve with aortic stenosis on May 29 of this year, verified as severe June 18 with AVR needed within a year. I consult with the recommended surgeon on August 3 (earliest available appt) and hope to schedule surgery this calendar year.

I am happily reading the replies to your post so I can be as prepared as possible for both surgery and recovery. I'm leaning toward renting a power lift recliner (about USD $200/month) because like you I toss and turn frequently. (I don't have the floor space to keep one permanently so renting is the way to go for me).

I'm also leaning toward a mechanical valve as you are. Though I don't like the idea of taking blood thinners for the rest of my life, I like the idea of another surgery even less. Also, my cardiologist implied that I might need Warfarin even with a biomechanical valve, albeit temporarily.

I try to remain positive by reminding myself that people who do not have a fixable health issue would trade places with me in a heart beat (no pun or irony intended), though I'm sure anxiety will increase as the surgery draws closer. I've done a lot of "final" paperwork so I feel good about my last wishes being carried out if needed. That's something I've needed to do anyway.

I will keep you in my prayers (if you've no objections) and follow this thread as long as you are able to post. Please update us when you are able.
 
Thanks for your reply and I am happy to be in your thoughts and prayers and will do likewise. The feedback here is fantastic ... I have done a little more googling and it looks like recliners are available to rent .. which would be a decent option ... As I have only over a week to go before the op I will check on availability .. but knowing it is an option makes life easier. On the Warfarin there is a great thread on this forum on the subject and a lot of contributors have commented, with experience, that it just needs to be managed but is no big deal in the scheme of things if you are relaxed and confident with it.
 
Hi Vincent - how did the op go? Hope you are recovering well.

Re self-testing of INR - I had my AVR exactly a year ago, and having a busy job etc wanted to go for self-testing as soon as possible. If you haven't yet discussed this with your GP, I attach some notes I prepared for this based on the NICE report, which recommended self-testing for AVR patients which I can email if you message me (can't upload attachments here). I had heard that some doctors are reluctant to allow patients to self-test, but found my GP extremely supportive. (I wonder if some GPs are resistant because the cost of test strips then comes from their GP budget, but hospital clinic tests do not?).

Re flying - I took a 4 hour flight about 4 months after surgery. No problems at all, including with hand luggage (which was almost entirely tablets, syringes [for insulin] and medical equipment!) . I had a pacemaker fitted too, due to surgical complications when the AVR was carried out, and again no problems with passing through security (avoiding the detector arches).

Re blood pressure monitoring - good quality meters are pretty cheap (£20 - £50). I test my pressure at home and enter the results in Excel so that I can plot graphs and see trends. I try to measure at about the same time each day, so that variations because of activity do not confuse the trend graph. I have found it quite useful to take these graphs along to doctor appointments as I was experiencing too low pressure at times, so blood pressure tablet dose needed reducing.
 
Andy, thanks for the note .. The op went really well and my recovery has been fantastic ... I feel much better now than I have felt for a couple of years. Today is 8 weeks since the op and next week I go back to work. I would appreciate the notes you mention and will try and message you separately on these. Being a bit of a gadget freak I have discovered that my iPhone is recording all my steps ( as long as it is in my pocket) and my apple watch is recording my heart rate when I exercise .. I am now doing 8 to 10 miles very brisk walk (under 14 mins per mile) each day and measure my weight BP with Withings scales and BP monitor that deliver the data to my phone.

I have done one short return flight to see my mother in Ireland and have another one tomorrow with long haul (USA) planned for mid October and then a golfing holiday in Spain at end of October ... This was planned nearly a year ago and one of my big recovery goals was to be fit for that .. I walk around the course at the moment with my buddies and will putt but nothing else golfing for another 4 weeks.


I am very keen to self test on INR due to busy life ... And would appreciate your info .. Right now I am struggling to get inr above 1.8 ... Saw my surgeon last week who was concerned about this (and nothing else) so need INR twice weekly until fixed in range ... I think the increased dose over the last few days will work as I got a slight Nick in my finger yesterday and it took a while to clot ... And then started again today when I bumped it.

Will message you and many thanks ....
 
And Vincent63 be sure to make the record test every 7 days. and try to cut back on twice a week INR, if you need to change your dosage, you have to give the new dosage time to get into your system and stablize. Too much testing is not good, need a space of seven days between readings. Have a great tavel time and keep in touch. Hugs for today.
 
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